Weekly Link Roundup 08/23/2011

This week’s theme is pain. Not just any pain, but pelvic pain. That’s right, I’m talking about vagninismus, vulvodynia, endometriosis, IBS, internal cystitis, etc. I started having pain with sex my senior year of high school and finally received a secondary diagnosis of vulvodynia in April of this year. It is one thing I have never spoken about to anyone  (other than my significant other at the time), mostly out of embarrassment and shame. There is no reason for those feelings though, and it is time to get real. Chronic pelvic pain is debilitating and most women suffer in complete silence. It’s not easy to explain or maintain a ‘normal’ social or sex life. It’s even harder to get women talking about these sensitive conditions, but is time we begin and I am ending my silence today. Keep in mind most of these links incorporate more conditions than just vulvodynia.

1. Vulvar Pain Foundation — The VP Foundation will send you a newsletter keeping you updated on the latest treatments, seminars and workshops, specialists, and research. Advocate and educate, ladies. It’s time to stop being ashamed of your vagina. That’s right, I said it.
   
   
2. Vulval Pain Society— VPS “is a confidential service for women who suffer from vulval pain due to vestibulodynia and vulvodynia.” Providing a VPS handbook, support groups, treatment options, self help for both the afflicted and their partner(s), and possibly my favourite addition to their website: Smears Without Tears: A patient’s guide on how to get through your speculum exam with minimal suffering and your dignity intact. Definitely keep VPS in mind when looking for help and hope— it’s out there.
   
   
3. Life With Vulvodynia— A personal take on life with pelvic pain, from this lovely woman’s sex life to nursing school. As she says “It can get better. There is hope.” You are not alone.
   
   
4. Vulvodynia Matters — A Boston-based nonprofit organization dedicated to helping women overcome the pain and isolation of vulvodynia. VM provides resources„ information, a link to other pelvic-pain related blogs and online support forums, and the latest news about chronic pelvic pain. There are tons of volunteer opportunities to get involved in and plenty of events posted on this site, especially if you live in the Boston area. I knew I loved this organization as soon as I saw the quote on their home page:
   
   
   
   “If there’s an elephant in the room, introduce it.”
   —Randy Pausch, The Last Lecture
   
   

Blog of the week: Gotta Love It! — Fashion, cupcakes, love, good eats, and so much more, Gotta Love It is run by the lovely Shea, a childhood friend of mine. She shares her fashion finds for less and I love her make up reviews. Gotta love it!

Weekly Link Roundup 08/14/2011

 

An Endometriosis/Pelvic Pain-related roundup this week!

1. Uncommon Manifestations: Sciatic and Thoracic Endometriosis— an article on Endosupp about the lack of awareness of these rare endo forms, their history, treatment, and clinical signs and symptoms. If you have endometriosis in your family, suspect you have endometriosis, or have a doctor who refuses to listen to specific symptoms pointing to SE or TE, please please please seek out a second opinion. As unfortunate as it may be, sometimes the physician must be educated as well. Doctors can learn a lot from an informed patient. Be your own advocate.
2. Endometriosis Support Forum on HysterSisters—HysterSisters is a site dedicated to women suffering from gynecological conditions and recovering from surgery, specifically hysterectomies. This Endometriosis Support forum includes over 101 pages of threads
3. EndoCenter— Endocenter is an organization that “addresses the ever-growing need for Endometriosis research, education, awareness and support on a global basis.” A great resource and database for latest endo news. Endocenter lists multiple contacts and websites for both online and in-person support groups, as well as volunteer and awareness opportunities. You can also request EC materials from the organization as well. Better yet, their headquarters is here in south FL :) 
4. TalkAboutEndo— A tumblr very similar in concept to Chronic Curve, only dedicated specifically to Endometriosis awareness. Straight, simple, and to the point— Talk About Endo provides endo facts, news, research, an honest place to discuss this painful disease, and most importantly, hope.

A question for my followers: Do any of you know of any resources that discuss and provide support to women trying to maintain intimacy in a relationship while suffering from pelvic pain? A painful sex support network, if you will. If anyone knows of any valuable resources, please send them to me— thanks!


Blog of the Week: Serif & Sans— Run by the lovely Miss Stephanie Sharp, an aspiring journalist with strong opinions and a unique perspective on contemporary issues. Her writing is both tasteful and profound with a unique eloquence in her words, touching on everything from Disney princesses to politics. Miss Sharp’s blog is a must-read.